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Old 06-26-2012, 12:11 PM   #1
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Trip update and lessons learned

Lucy, son, and I are back from our vacation. We toured southern california, spend a few days with my brother and my elderly mother. All in all, it was a good and very important trip for all of us.

First, the good parts: Most importantly, Lucy enjoyed the trip immensely. Well, at least she remembers all the good parts and does not remember the more trying parts. Another huge plus: son was barely on speaking terms with Lucy before the trip. He resented greatly Lucy's insistence on parenting despite the fact that she often not a clue what was going on and seemed to have lost the knack to listen before lecturing. The trip helped son learn more about issues confronting Lucy and he has grown immensely more understanding. Learning to deal with her better also helps. Both my brother and mom noted that Lucy's "oddness" was very apparent. It was very important for me to have this ratification from my family. Now I don't feel so all alone. Spending uninterrupted time with her also helped me to understand better what may lay ahead, and that is very good.

Then, the not so good parts: her judgement and cognition are worse than i thought. Now I am having reservations as to how effectively she can continue to manage her diabetes. Her social skills are pretty dismal as well. Her attempts at humor are mostly sarcastic jabs at people, and she seems to take most things as personal insults. There are definitely large gaps in her memory. For example, she forgot when to whom to show her ID at airport check ins...for a businesswoman who used to fly weekly, that was really glaring. She has no memory of the redwoods, a place she and I used to visit on multiple occassions. On the last day of our trip, we visited chinatown and i took some family pictures. I showed her the pictures on the plane, and she had no recollection of when and where. And then there were some afternoons and evenings when her speech became slow and a bit slurred... Almost as if she was drunk.

 
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Old 06-26-2012, 02:34 PM   #2
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Re: Trip update and lessons learned

I would say even the bad is good in that you now have a better understanding of what you are dealing with. Most of all I think I am pleased that your son has a better handle on this disease and Lucy. That will go a long way to make life a little better for him and for you. If that was the only outcome it was a huge step in the right direction Having the validation of your brother is a huge support for you. He may not be close but he is a resource for support!

I am not surprised by any of the statements you made in the last paragraph. It is all typical. They do become self focused and lose their ability to consider others. What happens is all about them. They do not perceive how it affects other. Back when you talked about her eating the whole cake, I questioned her ability to manage her diabetes. She doesn't understand the consequences of her own actions... even if she did at one time. The social filter that tells us how to act with other is damaged early and with it goes their ability to function in social settings. They do say things that are inappropriate and don't understand why their actions are not appreciated. Gaps in memory are probably the best known symptom. But not understand how to do things they have done all their lives is just as prevalent. Imagine my astonishment when I realized that Mom (a bookkeeper who worked with number all her life) could not keep a check register!! Evenings are worse because of a phenomenon called Sundowning. There is no explanation as to why but it is a recognized phenomenon. If her speech is being affected, then this cognitive decline is progressing.

I have said this recently but Memory Loss is the best known symptom of cognitive decline but it is not always the first symptom there is. Things you described can be more glaring than Memory Loss. Behavioral issues, self absorption, poor judgement, inability to do things they previously could do, inability to follow direction are all things that you will notice sometimes before the memory loss.

Now that you know better what you are dealing with, a diagnosis would be nice and then you can start making decisions for the future. It's not easy but you are well on your way

Love, deb

 
Old 06-26-2012, 03:28 PM   #3
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Re: Trip update and lessons learned

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Originally Posted by Gabriel View Post
I have said this recently but Memory Loss is the best known symptom of cognitive decline but it is not always the first symptom there is. Things you described can be more glaring than Memory Loss. Behavioral issues, self absorption, poor judgement, inability to do things they previously could do, inability to follow direction are all things that you will notice sometimes before the memory loss.
Yes, the behavioral changes came much earlier, which had made me think perhaps it was some sort of psychiatric issue. The memory symptoms came on only the last half year or so, but did not become glaring until now. Even Son commented to me yesterday that it is becoming second nature to just repeat the answer to the same questions over again. It doesn't phase or bother us anymore, and sometimes we don't even notice.

Yes, patching up of relationship between Lucy and Son is very important to me. Lucy has done so much for him in his younger years, and I would really hate it if all he can remember is the current "contrary" Lucy.

Having my brother's backing is also very important. My brother and I have always functioned as a unit, investment-wise, taking care of family, and interacting with others as a family unit. He is one person I can trust implicitly.

As for Lucy's own sons.... I will give them chances to participate and to contribute, but my plans are for the contingency that I have to go it alone. I just don't know how long I can have Lucy home, especially in view of her diabetes, and the need for me to continue my work. I still have not yet accomplished what I believe I have been placed on this earth to do. Very unfortunately, the task is not to find a cure for dementia.

I still have Son to put through private college, and on this point I will not compromise. It's a promise I made a long time ago to the big guy upstairs. Which, incidentally, Son loved Cal Tech and MIT. Let's hope Cal Tech or MIT also loves him. To say I am extremely proud of him is an understatement.

I have been reading and re-reading Beginning's postings (a huge thanks, Beginnings!). Certainly the issues I am beginning to deal with are a far cry from someone who is already very elderly with limited mobility, or at least already retired. The only semi-roadmap I have is what Beginnings has forged. To say that I am very scared is an understatement. I just don't know how I can get it all done......

Last edited by Luau; 06-26-2012 at 03:33 PM.

 
Old 06-26-2012, 05:55 PM   #4
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Re: Trip update and lessons learned

Luau ~ Welcome back. I'm glad you had a fruitful trip on many levels. I am sort of new to posting on this board...I usually am hanging out on the Back board...so I may have missed a conversation about what I am about to post. (I have read on this board from time to time as my mom recently died of AD in May, and I used to read but never participated much.) I tried to look through your old posts so as not to be repetitive, but there is too much to go over. So pardon me if I am covering old ground....

I recently ran across a site that I was not familiar with and it had many articles on frontotemporal-dementia. The various articles and informative presentations, case histories, etc. sounded so much like what you have described is happening with Lucy, that I just had to ask you whether you have considered this as a possibility?

 
Old 06-26-2012, 08:59 PM   #5
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Re: Trip update and lessons learned

Luau, Beginning is the expert here for early onset dementia.

As you know, you will still keep working and have your own career and you will continue to do what you need to do for your son. Lucy probably can get Medicaid since she has no work and no more money as you mentioned. No house either. So get Medicaid for her first to prepare for the future.

For sure her own sons have to be involved. I know you are the husband and for now it is your sole responsibility to care for Lucy. But do enlist her sons and even your son as backups. When you get sick or busy, the sons can help her out. e.g., if there is any emergency that requires a family member's permission and so on. It does not hurt to have more help as backup. The issue is that the sons are far away and may be too young now to know how to help Lucy.
You probably need to take it one day at a time. It will be a lonely road. I am glad your brother is there for support. Enlist all the people who can help. Right now you are the only one Lucy has. Please do find some support from the local area and continue to vent here.

Take care,
Nina

 
Old 06-26-2012, 09:39 PM   #6
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Re: Trip update and lessons learned

Nina, Medicaid doesn't work that way. It is related to half of the family assets, not the individual assets. You have to calculate the total family assets and spend down her half.

Luau, I do understand your point about her sons. I remember you said at least one was in denial. It would be nice if they would step up but you can't take that to the bank at this point. You do need to give them an opportunity to do what they will but the bulk of the responsibility is going to probably land on your shoulders. It is definitely scary, but I have faith that you will find the right solution for you, your son, and Lucy. And I do include all three of you because each is important. Dementia can be overwhelming and consume all that is around it. Please know that you and your son are just as important and Lucy and you have to do what is right for all three of you

Love, deb

 
Old 06-27-2012, 05:33 AM   #7
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Re: Trip update and lessons learned

To Teteri: thank you for your support! In reference to your suggestion of frontal-temporal D, yes, in fact that is the direction I am thinking, more so than early onset Alzh. The symptomology (I think I just invented that word) fits. However, only a careful brain scan can give more info, and most often times the diagnosis is still ambiguous. So it doesn't matter much to me which label is applied. All existing treatments are only for partial relief of symptoms. The only other possibilities are hormonal/electrolyte imbalances and adverse drug interactions; both are pretty much ruled out by now. Brain tumor is the last possibility, albeit a still pretty yucky one, and I've got to get her to a neurologist ... another story unto itself.

To Nina and Deb, about her sons. As you know they are in their late twenties and just on the threshold of huge breakthroughs in their personal and working careers. So until lately, I have been sparring them on the details. It was just the other day I finally noticed it has been 2 years since either of them spent more than 24 continuous hours with their mom. Even christmases have been quick in and quick exit. Upon interviewing them, they both said the reason was they were finding her increasingly hard to interact with for longer than brief encounters, especially more so with her preoccupation with her dogs. Now, I am telling them they MUST find some time within this next few months to come home and to spend AT LEAST 48 continuous hours with their mother. This is the only way they can begin to grasp reality and to be able to participate with me in a helpful way to plan for the future. 48 hours in the next 2 - 3 months is not too unrealistic, is it?

Last edited by Luau; 06-27-2012 at 05:34 AM.

 
Old 06-27-2012, 08:49 AM   #8
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Re: Trip update and lessons learned

No Luau, it is not unrealistic to ask the sons to spend a couple of days with their Mom to understand where she is at this point. They have been avoiding visits because she was becoming harder to connect with... hummm At least now they will have an explanation for why that was happening. It is time for you to fill them in and show them their Mom's condition. They will do one of two things. They will embrace what is going on and it will come as an explanation to what they have seen.... or they will remain in denial and move further away. But you are going to have to be open and honest with them about Lucy's condition to find out. I think you owe them that. The choices they make are then up to them. My hope is that they rise to the occasion.

A diagnosis will also help sway them

Love, Deb

 
Old 06-27-2012, 08:56 AM   #9
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Re: Trip update and lessons learned

This is true. Like what Deb said, if you show her sons what is really going on medically, not emotionally, they may turn around and see. Sometimes I think they may think Ok she got a husband so it is his problem, why should they come in the middle? I am not familiar with families who have step-parents and step-sons, but I can tell that they sometimes may try to draw a line here. Not that you are not nice or anything.
e.g., after my sister re-married, her adult daughter is now distant from the step-Dad including her Mom.
It is not realistic to force step-parents or step-kids to act like biological kids/parents.

The thing to do here is to tell them Mom is sick. For example, if you tell them Mom is dying or needs 911 and now in the ER for some dying situation, will they continue not to show up? Do they have a good relationship with Mom? If they care, they will come around. Give them a chance to see what is REALLY going on.

Hugs,
Nina

Last edited by ninamarc; 06-27-2012 at 08:58 AM.

 
Old 06-27-2012, 09:55 AM   #10
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Re: Trip update and lessons learned

Quote:
Originally Posted by ninamarc View Post
The thing to do here is to tell them Mom is sick. For example, if you tell them Mom is dying or needs 911 and now in the ER for some dying situation, will they continue not to show up? Do they have a good relationship with Mom? If they care, they will come around. Give them a chance to see what is REALLY going on.

Hugs,
Nina
Well, this is exactly the point, Nina! Thanks for verbalizing it so well. The kids were staying away because all they knew was that Mom was increasing unpleasant to be around. The good news was they did not disappear. They still did their filial thing and called Mom at least weekly, etc. For a couple of years before I knew what might be happening, I also thought she was turning into a selfish, volatile, and erratic jerk. I haven't shared this with anyone before this, but I was considering the dreaded "D" option. I am pretty sure that once the kids can see that it is not their Mom but the disease that is driving behavior, they will come around, as I have.

Last edited by Luau; 06-27-2012 at 09:57 AM.

 
Old 06-27-2012, 02:05 PM   #11
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Re: Trip update and lessons learned

This is one reason I would love for brain damage rather than memory loss be used to describe dementia. Memory loss is far down on the list of symptoms as far as I am concerned. It is be behavioral problem, mood changes, self absorption, and other emotional changes that truly come to the surface first. It is almost a relief to find out that it is a disease and not just someone being a jerk

I do remember losing my last ounce of patience with Mom before the idea of Alzheimer's solidified. When I figured out what was gong on it did make a huge difference. Hope your sons are the same!!

Love, deb

 
Old 06-27-2012, 06:56 PM   #12
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Re: Trip update and lessons learned

Quote:
Originally Posted by ninamarc View Post
The thing to do here is to tell them Mom is sick. For example, if you tell them Mom is dying or needs 911 and now in the ER for some dying situation, will they continue not to show up? Do they have a good relationship with Mom? If they care, they will come around. Give them a chance to see what is REALLY going on.
Lucy has had a rough time of it the past few years. You may remember that I mentioned she also battled successfully colon cancer. When I broke the news to the two sons, #1 was ready to hop on the next plane to visit. He did not stay long, but did manage to visit a couple of times during her recovery from the surgery and during her chemotherapy, which was a little over a year ago. Son #2, despite my outright mentioning that both need to come and visit their mother, never did come. He did telephone, faithfully every week, but he never took the time to visit. Personally, I also had a scare with prostate cancer 3-4 years ago. Again, #1 son was ready to drop everything to lend support. Nothing from #2. Not even a card. When he telephones, not a mention or reference about my condition.

So now it has come to this. I expect #1 to come around once he realizes the full extent of the problems but I anticipate #2 will run the opposite direction. I also do not expect #2 to follow my not so subtle suggestion of coming to spend 48 continuous hours with his mother this summer. I hope I am dead wrong with my assessment of #2; otherwise it is a real shame.

 
Old 06-28-2012, 08:00 AM   #13
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Re: Trip update and lessons learned

I have one nephew and one niece who are behaving very strangely even to their own parents (different sisters.) They don't come home for reunion anymore. The nephew did say the family was dysfunctional and not worth his attention or something... The niece is the one with the stepDad. I doubt that she talks much with her stepDad although the rest of us get along with my brother-in-law fine. Once she did disappear to Europe and came back later on in a few months.
It is hard to tell why they are doing these things. In the old times, we are supposed to do good to our parents, real or political... Now the new kids just get off even if you know where they are. A phone call may be wonderful enough...The niece is better now and hope she will come back more. They are all in the same state within one hour's drive!!

Sure hope the first son will come around to see Mom. Don't expect too much from the second one although keeping him in the loop doesn't hurt.

Regards,
Nina

Last edited by ninamarc; 06-28-2012 at 08:08 AM.

 
Old 06-28-2012, 08:09 AM   #14
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Re: Trip update and lessons learned

This is off topic -- but be sure to keep Lucy well-hydrated in this HOT weather. I still think it sounds like she has a brain disease that involves a chemical imbalance, similar to bipolar, and it is very dangerous to become dehydrated.

 
Old 06-28-2012, 08:31 AM   #15
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Re: Trip update and lessons learned

It is great that you are able to keep the boys informed as to what is happening, I am wondering what it is that you expect from the boys, firstly it seems that they live a distance away, secondly you mentioned that they have good full time employment so it is not lokly they will move closer to help out, are you wanting support from them physically , is it that you want them just to spend time with there mom , My sister has frontal lobe dementia, it does present itself like alz, she lost a really good job because they said she was under to much stress, it took 2 years to get to the bottom of her problems and a correct diagnoses. You are still stabbing in the dark without a diagnoses. I would get the boys to visit if they can but most importantly have them phone twice a week if they can, figue out what it is that you want from the boys, be it spending time with mom to give you break or perhaps taking their stepbrother for a couple od days to give him a break, asking them to come and visit just to show them how Lucy is acting will do nobody any good unless you have some sort of plan. Perhaps they can come and visit after you finally get Lucy into the doctors and they can be there for support. In the end like my BIL it will fall to you to look after Lucy's needs. Weather it is early onset or late onset there will always be some relatives who just will not step up and help, plan on doing this mosly buy yourself and perhaps hired help, and if the others participate it will be great. And most important keep posting...
Hugs Judy
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